Wednesday, July 11, 2007

Home at last

We got home just a bit ago, having spent a good deal of time crawling in the northbound traffic on I-35 (the part through Lewisville was just ridiculous). Alice's hair seems in a bit better shape this time around than last time; I think they must be using a better solvent at the end to take the leads off her head.

We arrived Monday morning early and settled into our little nook on the sixth floor of Children's Medical Center in the Epilepsy Monitoring Unit. On the EMU, they have a full-time video feed and EEG of your child, so they can see just how often she seizes and where the seizures are originating.

This time around, they did an Ictal Spect. For this test, when I notice she's having a seizure, the nurse comes right in during the seizure and injects a contrast into her IV. During a seizure, blood flow increases to the areas of the brain that are seizing, so if they inject a glow-in-the-dark juice at that moment, it'll all collect in the spots of her brain that are seizing. Then about an hour or two later, they put her on this table and take 360-degree photos of her brain with a huge rotating camera/x-ray machine. When the photography is done, they have a three-dimensional, rotating CAD view of the brain that shows precisely where the activity is located. Pretty amazing, really.

Then today they did an Inter-ictal spect, meaning they do the very same procedure only in-between seizures instead of during one. It's sort-of a "baseline" test, to see what the differences are.

Dr. Rana Said (pronounced sah-YEED), who works alongside Dr. Arnold, told me today what we're looking at right now. They all had a pow-wow concerning Alice's case earlier today to determine the best course of action. Her seizures are almost completely right-hemisphere, with occasional left-hemisphere involvement (but they believe that those originate from the right side first, which is significant). They believe that a full hemispherotomy (a complete separation of the two halves of the brain) will afford Alice the best chance at seizure-free living and perhaps even beginning to catch up to her peers a little bit academically. The one remaining concern they have is that the left side of her brain does have a small area of damage in the back part, at the visual center. They're going to have a pediatric ophthalmologist evaluate her to determine whether a hemispherotomy will significantly damage her vision because of that damaged area being in the good side of her brain; if that's the case, then we'll look at other options.

After that, she'll be evaluated by a neuropsychologist, who will test her ability to perform cognitive and motor tasks and see how her current brain damage actually manifests itself.

If all of this goes as planned, my little girlie will then undergo major brain surgery.

[sigh] I know it's probably the best thing we could do for her, but it doesn't change the fact that it makes me REALLY mad that she's even having to go through this at all... thanks to some scum who mistreated her when she was small. I want to forgive, obviously, but I also would like for that person to know just what an effect they had on a human being's life when they made the compulsive decision to shake her.

Anyway, that's where we are.

Oh, and if my camera had been charged, I would've taken a photograph of Dr. Said -- she has got to be the most stunningly attractive doctor I've ever met in my LIFE. She got her MD in Amman, Jordan and did residency in Boston. From her accent, or complete LACK of anything other than pure American, I'd almost guess she grew up here in the US, but why would she have gone to med school in Jordan then? At any rate, she's beautiful AND wonderful, taking plenty of time to answer all my questions and complimenting me on my alertness to Alice's seizures before they even were able to detect them on the video feed.

Thanks for praying for us, and don't stop now. We're not out of the woods yet.